Late Stage and End-of-Life Care The final stages of a terminal illness can be a highly challenging, emotional time. This caregiver’s guide can help you provide comfort, deal with grief, and make final decisions. What is late-stage care? In the final stages of a terminal illness, it can become evident that in spite of the best. 350 quotes have been tagged as journey-of-life: Mandy Hale: ‘You’ll learn, as you get older, that rules are made to be broken. Be bold enough to live lif.
Behavioral and psychological changes: As a person begins to accept their mortality and, they may begin to withdraw from their surroundings. They are beginning the process of separating from the world and those in it. Your loved one may decline visits from friends, neighbors, and even family members. When she does accept visitors, she may be difficult to interact. This is a time when a person begins to contemplate their life and revisit old memories.
In evaluating her life, she may be sorting through any regrets. She may also undertake. Physical changes: The dying person may experience as the body begins to slow down. The body doesn't need the energy from food that it once did. The dying person may be sleeping more now and not engage in activities they once enjoyed. They no longer need food nourishment.
The body does a wonderful thing during this time as altered body chemistry produces a mild sense of euphoria. They are neither hungry nor thirsty and are not suffering in any way. It is an expected part of the journey they have begun. The dying process often accelerates in the last one to two weeks of life and can be frightening for families. The mental changes, especially, can be disturbing to family members. At this point in the journey, it is not advisable to 'correct' your loved one if she tells you something that doesn't make sense.
Gently listen, and support her in her thoughts. If she claims to see loved ones who have died, simply let her tell you. We really don't have a way to know if these are hallucinations, or if our loved ones have seen something we cannot see.
Simply love her. The body temperature lowers by a degree or more. The blood pressure lowers. The pulse becomes irregular and may slow down or speed up. There is increased perspiration.
Skin color changes as circulation is diminished. This is often more noticeable on the lips and nail beds as they become pale and bluish. Breathing changes occur, often becoming more rapid and labored. Congestion may also occur causing a and cough. Speaking decreases and eventually stops altogether.
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Periods of quietness may be interrupted by sudden movements of a person's arms or legs. The last couple of days prior to death can sometimes surprise family members. Your loved one may have a surge of energy as she gets closer to death. She may want to get out of bed, talk to loved ones, or ask for food after days of no appetite. Some loved ones take this increase in energy to be a sign the person is getting better, and it can be very painful when the energy leaves. Know that this is common, and is usually a sign that a person is moving towards death, rather than away.
This surge of energy may be quite a bit less noticeable but is usually used as a dying person's final physical expression before moving on.
IntroductionThe recognition and weighing up of factors that may indicate that someone is in the last days or hours of life are complex and subtle. This can be a difficult task, even for an experienced palliative care clinician. Prognostic tools have been developed to assist clinicians in making a more accurate prognosis, but they are not used in routine clinical practice so clinicians are not familiar with them.The current approach to recognising imminent dying utilises a range of signs and symptoms that are best observed over days to weeks, if the dying person's clinical course allows such observations. Over a period of days these include multiple organ failure, progressive weakness, reduced mobility and ability to carry out normal activities of daily living, increased periods of sleep, reduced oral intake and a general reduction in cognitive function, awareness and communication (with family or other important people as well as professionals). Changes that may indicate impending death within hours, that have been prioritised for inclusion in this review, include variations in respiratory cycle, weakening of pulse, and shutting down of skin circulation, and noisy respiratory secretions.A further challenge arises when a person who was thought to be imminently dying, starts to show signs of recovery such as increased alertness and communication, desire for oral intake and improved mobility. Such reversals may be temporary, or may signify a true recovery from the dying process.
Therefore it is important to determine the evidence base in this area to implement any necessary changes in clinical management to assist the person with living for a longer period of time, for example, reinstatement of medications, hydration and nutrition that may have been withdrawn.The ‘More Care Less Pathways’ review recommended that clear guidance be issued on the clinical decision-making process at the end of life and, in particular, managing the uncertainties around diagnosing the dying or recovery phases. The Committee chose to ask the following question. Review question: What signs and symptoms indicate that adults are likely to be entering their final days of life; or that they may be recovering? How are uncertainties about either situation dealt with?For full details see review protocol in.This is an integrative review which allows for the inclusion of different study designs (experimental, observational as well as qualitative) in order to fully understand an area of concern. The incorporation of qualitative elements (and information from published Delphi consensus surveys) enabled further exploration of these areas.
Mixed methodology is often used to capture a wide range of evidence in systematic review, but further to the synthesis of the relevant studies it includes a thematic analysis to provide a conceptual map of the topic (that is, a theoretical framework). The results are presented as a summary, and narrative synthesis captures results that may not be directly apparent from a quantitative or narrative synthesis alone (such as the uncertainties of recognising the signs in the final stages which will be useful for the other topics in this guideline). Clinical - quantitativeThe quantitative evidence review found that there is moderate quality evidence from observational studies using multivariate analysis of people with terminal cancer admitted to a palliative care unit, reporting Eastern Cooperative Oncology Group (ECOG) score, fatigue and desaturation. One study of 374 people showed a reduced ECOG score as a predictor of mortality within 7 days, OR 3.45 (1.65, 7.20). An associated study of people aged 65 years and over (n=459) supported this finding, OR 2.02 (1.40, 2.92). A low quality study of 93 people in the same setting determined fatigue and desaturation as predictors of mortality within 2 weeks, HR 5.90 (2.04, 17.03) and HR 3.30 (1.42, 7.66), respectively.An increased triage pulse (greater than or equal to 110 bpm) and increased triage respiration (greater than 28/min) was identified as a predictor of mortality within 2 weeks, RR 4.92 (1.42, 17.09) and RR 12.72 (3.08, 52.49), respectively (low quality evidence).
Clinical - qualitativeQualitative evidence indicated several themes around healthcare professionals' experiences in recognising adults that are entering their final days of life or who may be recovering. Moderate quality evidence from 5 studies (2 qualitative studies, n=33; 2 Delphi studies, n=324; and 1 observational study, n=474) indicated that physical changes, including cardiovascular changes, deterioration of physical condition, reduced oral intake, worsening pain and skin changes, were observed. Two moderate quality qualitative studies of 33 healthcare professionals identified presentation of spiritual and psychosocial changes, such as social withdrawal, changes in mood and changes in spiritual experience.The theme of difficulty in recognising dying was found to include the following subthemes; complexity of recognising dying (2 interviews and 1 survey of moderate quality, n=285) and factors that affect prognostic accuracy (2 surveys of moderate quality, n=719).
The dying trajectory was recognised as variable in length of time (1 study of moderate quality, n=15).Little evidence was identified for managing uncertainty for those entering the last days of life or who may be recovering. One low quality qualitative study (n=8) was identified that explored junior doctors' perceptions on how they would manage people differently if they thought they were going to die. Conceptual frameworkThe evidence identified from the quantitative and qualitative reviews has been summarised graphically in a conceptual framework shown in.
This reflects the themes identified from the qualitative review along with the evidence from the quantitative review. The Committee were keen to represent the dying trajectory and the potential for improving within this framework. The Committee considered it an important tool for bringing together the mixed methods review and aided formulation of recommendations.
Managing uncertainty.The themes identified in the qualitative study supported those identified in the quantitative review. Candy crush friends saga to play for free download. These have been used to construct the conceptual framework used to highlight both the deteriorating and recovering aspects of the person's trajectory and links between uncertainty, managing accuracy of prognosis, communication and shared decision making.Other considerationsFrom the evidence review, the Committee recognised similar factors that they use in their clinical practice to recognise entering the dying phase.
They drew on the importance of gathering information from multiple sources in order to do this, including different members of the multiprofessional team. These included a review of the person's medical history and trajectory of symptom deterioration.
The Committee recognised that in some people this can be a reflection of a growing need for physiological support, particularly in the intensive care setting. The Committee also discussed the importance of clarifying any change in the dying person's social, spiritual and psychological needs, and also eliciting any goals and wishes they may have, which may be listed in the dying person's advance care plan. The Committee wanted to highlight the importance of basic principles of care when interacting with the dying person in the last days of life, considering the views of the person and those important to them.The Committee wanted to emphasise to those recognising dying that the trajectory also includes potential recovery and improvement and that uncertainty in diagnosing the individual should be taken into account when assessing for potential recovery. The Committee also discussed the reversibility of each individual symptom, for example for a person presenting with progressive weight loss there may be treatable causes that are inhibiting someone from eating.
The Committee therefore made a consensus recommendation that noted that changes in signs and symptoms could also represent stabilizing of the person's condition, even if temporarily, or that recovery was possible.The evidence review highlighted numerous signs and symptoms that could be used in recognising dying, including fatigue or progressive weight loss. The Committee highlighted that some signs and symptoms may be specific to the last days of life including Cheyne Stokes breathing and noisy respiratory secretions but, whilst specific, they are not universal symptoms.The evidence review suggested functional observations were predictors of mortality; in particular the Eastern Cooperative Oncology Group (ECOG) score. The Committee noted that this was not widely used in the UK, but is similar to the WHO performance scale (also called the Zubrod score). The Committee noted that it is specifically deterioration in the ECOG score that would indicate a likelihood of entering the last days of life, recognising that some disabled people may be at a score of 4 outside of illness. Although not identified in the evidence review, the Committee discussed other scores that may be useful, such as the Barthel Activities of Daily Living Index, Karnofsky Performance Status Scale and the Australia-modified Karnofsky Performance Scale. The value of laboratory tests, such as renal function tests or radiological imaging, in recognising dying was discussed.
The Committee noted that, whilst these can be useful tests in practice in an acute setting, these tests may not be appropriate to support recognising dying when people are dying in community settings, as they are invasive and may be considered inappropriate to measure. They chose therefore only to include them in their recommendation if they were available and noted that any data should be used in conjunction with other information of signs and symptoms as discussed above. The Committee made a further consensus recommendation that acknowledged that there may be some circumstances where undertaking clinical tests, even in the last 2-3 days of life, should be undertaken if there was a clinical imperative to do so. That is, the results would directly impact on the care of that person. The Committee felt that such examples would include situations where a full blood count could guide the use of platelet transfusion to avoid catastrophic bleeding. Additionally, measurement of serum electrolytes may helpfully indicate a cause for persistent agitation and seizures.The Committee discussed the evidence base and noted that it was in small and specific populations, such as people with lung cancer, whereas this guidance is looking at a broader population.
The Committee recognised that the likely time of death is particularly difficult to anticipate in some chronic conditions, for example dementia, when the disease trajectory is typically variable and there may be a long-standing reduced level of functioning. The Committee also discussed that specialist advice should be sought when there is continued uncertainty or for specialist conditions, for example, in circumstances when an individualised assessment is required for multimorbidity.
Colleagues with more experience may include specialist palliative care teams, but these may also include other specialties such as geriatrics, cardiologists or renal physicians. The Committee also felt strongly that reversible conditions should be assessed and noted that some signs and symptoms of improvement may be temporary. This links in to considering the whole disease trajectory and ensuring that there is recognition of recovery as well as when the person may die.From the qualitative review the Committee noted the theme of overestimation of a prognosis by consultants with long-term relationships with people. This is due to consultants not wanting to disrupt their relationship with the person, which may happen as a result of the bad news. They also noted the other extreme, where doctors who have never seen the person before are less concerned about informing the person of a poor prognosis or diagnosis.The Committee discussed the importance of monitoring for further changes in the person at least every 24 hours, but that more frequent monitoring may be required as symptoms can change quickly.The attitude of the person was recognised as a very important determinant; especially if they have decided themselves that the time is right for them to die. For example, reversible factors may have been identified, but the person may not want interventions to treat them. An important part of decision making was identified to ensure that the person is asked what they wish and how long they may wish to continue treatment for.
The Committee discussed the importance of good communication and shared decision making as being critical components of care (see and ).The Committee agreed that it is important that the likelihood that a person is entering the last few days of life is clearly communicated to all concerned including the person (if appropriate), the family and others important to them, as well as to other professionals involved in delivering care. They noted that not all people in the dying phase wished to be informed of their prognosis and, as such, chose to make this point specifically in their recommendations. The uncertainty around recognising the dying phase often lies uncomfortably with many healthcare professionals and the Committee noted that this may lead to poor communication and avoidance of frank discussions with the dying person and others. This approach in turn may give rise to delayed or inappropriate clinical decision-making and cause unnecessary distress.The Committee noted the importance of updating the care plan with any decisions regarding recognising dying. This is of paramount importance to alerting colleagues to the person's deteriorating condition, or possible recovery, so consistent care is given from all involved, preventing unnecessary distress to the dying person in their last days of life.The Committee agreed that managing uncertainty around recognising dying remained a challenge in practice beyond the use of any clinical judgement.
The review of the evidence identified potential predictive signs and symptoms for recognising death, but uncertainty still remains. The Committee were interested in the role of the multiprofessional team and how they may be able to manage this uncertainty to reduce its impact on clinical care, shared decision making and communication, and therefore chose to make a research recommendation.The Committee made a separate recommendation around seeking advice from colleagues with more experience of providing end of life care and agreed this may include specialist palliative care teams or other relevant specialties whose input would reduce the uncertainty in recognising dying. It may be difficult to determine when the dying person is entering the last few days or weeks of life. Predicting the end of life is often inaccurate, and current prognostic tools and models are limited. Some level of uncertainty in recognising when a person is entering the last days of life is likely and is often a challenge to planning care.
However, it is crucial to minimise this uncertainty to ensure that it does not prevent key discussions between the healthcare professional and the dying person and those important to them. It is therefore important to identify how the uncertainty of recognising when a person is entering the last days of life influences information sharing, advanced care planning and the behaviour of healthcare professionals. A mixed-methods approach (quantitative and qualitative evidence) is proposed that aims to explore how different multidisciplinary team interventions can reduce the impact of uncertainty on clinical care, shared decision-making and communication, specifically on engaging the dying person and those important to them in end of life care discussions. Multidisciplinary team interventions include any different methods of giving feedback, initiating end of life discussions, record keeping or updating care plans, compared with usual care.
Outcomes of interest include quality of life, patient or carer satisfaction, changes to clinical care and identification and/or achievement of patient wishes such as preferred place of death. In addition the barriers and facilitators for the healthcare professionals to manage this uncertainty to best support the dying person and those important to them should be explored.